Understanding Antenatal Genetics Services in Sri Lanka: Current Landscape of Screening and Diagnostic Services and Contextual Factors Influencing Their Availability and Uptake

Background: Too little information is available on Sri Lanka’s current capacity to provide community genetic services—antenatal genetic services in particular—to understand whether building that capacity could further improve and reduce disparity in maternal and child health. This qualitative research project seeks to gather information on congenital disorders, routine antenatal care, and the current state of antenatal screening testing services within that routine antenatal to assess the feasibility of and the need for scaling up antenatal genetics services in Sri Lanka. Methods: Nineteen key informant (KI) interviews were conducted with stakeholders in antenatal care and genetic services. Seven focus group discussions were held with a total of 56 Public Health Midwives (PHMs), the health workers responsible for antenatal care at the field level. Transcripts for all interviews and FGDs were analyzed for key themes, and themes were categorized to address the specific aims of the project. Results: Antenatal genetic services play a minor role in antenatal care, with screening and diagnostic procedures available in the private sector and paid for out-of-pocket. KIs and PHMs expect that demand for antenatal genetic services will increase as patients’ purchasing power and knowledge grow but note that prohibitive abortion laws limit the ability of patients to act on test results. Genetic services compete for limited financial and human resources in the free public health system, and inadequate information on the prevalence of congenital disorders limits the ability to understand whether funding for services related to those disorders should be increased. A number of alternatives to scaling up antenatal genetic services within the free health system might be better suited to the Sri Lankan structural and social context. Conclusions: Scaling up antenatal genetic services within the public health system is not feasible in the current financial, legal, and human resource context. Yet current availability and utilization patterns contribute to regional and economic disparities, suggesting that stasis will not bring continued improvements in maternal and child health. More information on the burden of congenital disorders is necessary to fully understand if and how antenatal genetic service availability should be increased in Sri Lanka, but even before that information is gathered, examination of policies for patient referral, termination of pregnancy, and government support for individuals with genetic disease are steps that might bring extend improvements and reduce disparity in maternal and child health.

Barriers and Facilitators to Adoption of Genomic Services for Colorectal Care within the Veterans Health Administration.

We examined facilitators and barriers to adoption of genomic services for colorectal care, one of the first genomic medicine applications, within the Veterans Health Administration to shed light on areas for practice change. We conducted semi-structured interviews with 58 clinicians to understand use of the following genomic services for colorectal care: family health history documentation, molecular and genetic testing, and genetic counseling. Data collection and analysis were informed by two conceptual frameworks, the Greenhalgh Diffusion of Innovation and Andersen Behavioral Model, to allow for concurrent examination of both access and innovation factors. Specialists were more likely than primary care clinicians to obtain family history to investigate hereditary colorectal cancer (CRC), but with limited detail; clinicians suggested templates to facilitate retrieval and documentation of family history according to guidelines. Clinicians identified advantage of molecular tumor analysis prior to genetic testing, but tumor testing was infrequently used due to perceived low disease burden. Support from genetic counselors was regarded as facilitative for considering hereditary basis of CRC diagnosis, but there was variability in awareness of and access to this expertise. Our data suggest the need for tools and policies to establish and disseminate well-defined processes for accessing services and adhering to guidelines.

Education - research - practice

Through this paper we will look at links between architecture education, research and practice, using a current project as a vehicle to cover aspects of building, pilot and live project. The first aspect, the building project consists of the refurbishment and extension of a Parnell Cottage for a private client and is located near Cloyne, in East Cork, Ireland. The pilot project falls within the NEES Project, investigating the use of materials and services based on natural or recycled materials to improve the energy performance of new and existing buildings. The live project aims to hold a series of on site workshops and seminars for students of Architecture, Architects and interested parties, demonstrating the integration of the NEES best practice materials and techniques within the built project. The workshops, seminars and key project documents will be digitally recorded for dissemination through a web based publication. The small scale of the building project allowed for flexibility in the early conceptual design stages and the integration of the research and educational aspects.

Drug prescribing patterns in the General Medical Services Scheme in Ireland and projected costs to 2026

The primary objective is to investigate the main factors contributing to GMS expenditure on pharmaceutical prescribing and projecting this expenditure to 2026. This study is located in the area of pharmacoeconomic cost containment and projections literature. The thesis has five main aims: 1. To determine the main factors contributing to GMS expenditure on pharmaceutical prescribing. 2. To develop a model to project GMS prescribing expenditure in five year intervals to 2026, using 2006 Central Statistics Office (CSO) Census data and 2007 Health Service Executive{Primary Care Reimbursement Service (HSE{PCRS) sample data. 3. To develop a model to project GMS prescribing expenditure in five year intervals to 2026, using 2012 HSE{PCRS population data, incorporating cost containment measures, and 2011 CSO Census data. 4. To investigate the impact of demographic factors and the pharmacology of drugs (Anatomical Therapeutic Chemical (ATC)) on GMS expenditure. 5. To explore the consequences of GMS policy changes on prescribing expenditure and behaviour between 2008 and 2014. The thesis is centered around three published articles and is located between the end of a booming Irish economy in 2007, a recession from 2008{2013, to the beginning of a recovery in 2014. The literature identified a number of factors influencing pharmaceutical expenditure, including population growth, population aging, changes in drug utilisation and drug therapies, age, gender and location. The literature identified the methods previously used in predictive modelling and consequently, the Monte Carlo Simulation (MCS) model was used to simulate projected expenditures to 2026. Also, the literature guided the use of Ordinary Least Squares (OLS) regression in determining demographic and pharmacology factors influencing prescribing expenditure. The study commences against a backdrop of growing GMS prescribing costs, which has risen from e250 million in 1998 to over e1 billion by 2007. Using a sample 2007 HSE{PCRS prescribing data (n=192,000) and CSO population data from 2008, (Conway et al., 2014) estimated GMS prescribing expenditure could rise to e2 billion by2026. The cogency of these findings was impacted by the global economic crisis of 2008, which resulted in a sharp contraction in the Irish economy, mounting fiscal deficits resulting in Ireland's entry to a bailout programme. The sustainability of funding community drug schemes, such as the GMS, came under the spotlight of the EU, IMF, ECB (Trioka), who set stringent targets for reducing drug costs, as conditions of the bailout programme. Cost containment measures included: the introduction of income eligibility limits for GP visit cards and medical cards for those aged 70 and over, introduction of co{payments for prescription items, reductions in wholesale mark{up and pharmacy dispensing fees. Projections for GMS expenditure were reevaluated using 2012 HSE{PCRS prescribing population data and CSO population data based on Census 2011. Taking into account both cost containment measures and revised population predictions, GMS expenditure is estimated to increase by 64%, from e1.1 billion in 2016 to e1.8 billion by 2026, (ConwayLenihan and Woods, 2015). In the final paper, a cross{sectional study was carried out on HSE{PCRS population prescribing database (n=1.63 million claimants) to investigate the impact of demographic factors, and the pharmacology of the drugs, on GMS prescribing expenditure. Those aged over 75 (ẞ = 1:195) and cardiovascular prescribing (ẞ = 1:193) were the greatest contributors to annual GMS prescribing costs. Respiratory drugs (Montelukast) recorded the highest proportion and expenditure for GMS claimants under the age of 15. Drugs prescribed for the nervous system (Escitalopram, Olanzapine and Pregabalin) were highest for those between 16 and 64 years with cardiovascular drugs (Statins) were highest for those aged over 65. Females are more expensive than males and are prescribed more items across the four ATC groups, except among children under 11, (ConwayLenihan et al., 2016). This research indicates that growth in the proportion of the elderly claimants and associated levels of cardiovascular prescribing, particularly for statins, will present difficulties for Ireland in terms of cost containment. Whilst policies aimed at cost containment (co{payment charges, generic substitution, reference pricing, adjustments to GMS eligibility) can be used to curtail expenditure, health promotional programs and educational interventions should be given equal emphasis. Also policies intended to affect physicians prescribing behaviour include guidelines, information (about price and less expensive alternatives) and feedback, and the use of budgetary restrictions could yield savings.

The impact of user charges on patient choice of healthcare services in Ireland

This research assesses the impact of user charges in the context of consumer choice to ascertain how user charges in healthcare impact on patient behaviour in Ireland. Quantitative data is collected from a subset of the population in walk-in Urgent Care Clinics and General Practitioner surgeries to assess their responses to user charges and whether user charges are a viable source of part-funding healthcare in Ireland. Examining the economic theories of Becker (1965) and Grossman (1972), the research has assessed the impact of user charges on patient choice in terms of affordability and accessibility in healthcare. The research examined a number of private, public and part-publicly funded healthcare services in Ireland for which varying levels of user charges exist depending on patients’ healthcare cover. Firstly, the study identifies the factors affecting patient choice of privately funded walk-in Urgent Care Clinics in Ireland given user charges. Secondly, the study assesses patient response to user charges for a mainly public or part-publicly provided service; prescription drugs. Finally, the study examines patients’ attitudes towards the potential application of user charges for both public and private healthcare services when patient choice is part of a time-money trade-off, convenience choice or preference choice. These services are valued in the context of user charges becoming more prevalent in healthcare systems over time. The results indicate that the impact of user charges on healthcare services vary according to socio-economic status. The study shows that user charges can disproportionately affect lower income groups and consequently lead to affordability and accessibility issues. However, when valuing the potential application of user charges for three healthcare services (MRI scans, blood tests and a branded over a generic prescription drug), this research indicates that lower income individuals are willing to pay for healthcare services, albeit at a lower user charge than higher income earners. Consequently, this study suggests that user charges may be a feasible source of part-financing Irish healthcare, once the user charge is determined from the patients’ perspective, taking into account their ability to pay.

« Utilisation des services de santé chez les personnes âgées : association avec la maladie chronique et l’incapacité »

Diverses publications soulignent l'augmentation de l'espérance de vie et avec elle, le vieillissement mondial de la population. Ce processus se poursuivra à l'avenir, ainsi que son influence sur l’incidence et la prévalence de l'incapacité. Chez les personnes âgées, l’incapacité, les maladies chroniques et leur association constituent un sujet important dans le domaine de la santé publique en raison de l'effet qu'ils ont sur la demande des services de santé. Le but de ce mémoire est d’examiner quelle est la contribution respective des maladies chroniques et de l'incapacité dans l'utilisation des services de santé chez les personnes âgées et de leur interaction. Il s’agit de savoir si l'association entre la maladie chronique et l'utilisation des services de santé est modifiée par l’incapacité prenant en compte les caractéristiques de l'individu et son environnement. Ce travail est basé sur le modèle comportemental proposé par Andersen et Newman et le modèle du processus d’incapacité de Verbrugge et Jette. Pour répondre à l’objectif, nous utilisons les données du projet de recherche “ FRéLE ” (Fragilité, une étude longitudinale de ses expressions), réalisé durant la période 2010 -2013 auprès d’un échantillon de 1643 personnes âgées vivant dans la communauté au Québec. L’incapacité est évaluée à l’aide de deux indicateurs : les AVQ et les AVD. Les maladies chroniques sont mesurées par l’indice fonctionnel de comorbidité (IFC). La dépression est évaluée selon les critères de l’échelle de dépression gériatrique (EDG). L’état cognitif est mesuré par l'évaluation cognitive de Montréal (MoCA). Les facteurs de prédisposition comportent l’âge, le sexe, l’ethnicité et le niveau scolaire. Les facteurs facilitateurs incluent le revenu et le réseau social, ce dernier étant mesure par la présence ou non d’une personne de soutien et son lien avec la personne âgée. Divers modèles de régression sont adoptés pour identifier les facteurs statistiquement significatifs du modèle comportemental d’Andersen et Newman et du modèle du processus d’incapacité de Verbrugge et Jette. Nos résultats ont montré que, si le rôle des prédicteurs de l’utilisation varie en fonction du type de services de santé utilisé, l’utilisation s’accroît principalement avec le nombre de maladies chroniques. En ce qui concerne l’interaction entre la maladie chronique et l’incapacité, nos résultats ont révélé que l’interaction n’est statistiquement significative pour aucun des services analysés. Compte tenu de la diversité et les besoins de la population âgée, caractérisée par une prévalence élevée de maladies chroniques et d'incapacités, l’étude des facteurs impliqués dans l'utilisation des services de santé sera utile pour la mise en œuvre d’une offre de services, plus conforme aux besoins de cette population

Assisting End-users in Filling Out Web Services

With the quick advance of web service technologies, end-users can conduct various on-line tasks, such as shopping on-line. Usually, end-users compose a set of services to accomplish a task, and need to enter values to services to invoke the composite services. Quite often, users re-visit websites and use services to perform re-occurring tasks. The users are required to enter the same information into various web services to accomplish such re-occurring tasks. However, repetitively typing the same information into services is a tedious job for end-users. It can negatively impact user experience when an end-user needs to type the re-occurring information repetitively into web services. Recent studies have proposed several approaches to help users fill in values to services automatically. However, prior studies mainly suffer the following drawbacks: (1) limited support of collecting and analyzing user inputs; (2) poor accuracy of filling values to services; (3) not designed for service composition. To overcome the aforementioned drawbacks, we need maximize the reuse of previous user inputs across services and end-users. In this thesis, we introduce our approaches that prevent end-users from entering the same information into repetitive on-line tasks. More specifically, we improve the process of filling out services in the following 4 aspects: First, we investigate the characteristics of input parameters. We propose an ontology-based approach to automatically categorize parameters and fill values to the categorized input parameters. Second, we propose a comprehensive framework that leverages user contexts and usage patterns into the process of filling values to services. Third, we propose an approach for maximizing the value propagation among services and end-users by linking a set of semantically related parameters together and similar end-users. Last, we propose a ranking-based framework that ranks a list of previous user inputs for an input parameter to save a user from unnecessary data entries. Our framework learns and analyzes interactions of user inputs and input parameters to rank user inputs for input parameters under different contexts.

The Impact of Geographic Mobility on Canadian Military families and their Children’s Access Special Education Services

To achieve academic success, children with learning-related disabilities often receive special education supports at school. Currently, Canada does not have a federal department or integrated national system of education. Instead, each province and territory has a separate department or ministry that is responsible for the organization and delivery of education, including special education, at the elementary level. At the macro (national) level, inclusive education is the policy across Canada. However, each province and territory has its own legislation, definitions, and policies mandating special education services. These variations result in little consistency at the micro (individual school) level. Differences between eligibility requirements, supports offered, and delivery methods may present challenges for highly mobile families who must navigate new special education systems on behalf of their children with medical or learning challenges. One of the defining features of the Canadian military lifestyle is geographic mobility. As a result, many families are tasked with navigating new school systems for their children, a task that may be more difficult when children require special education services. The purpose of this study is to explore the impact of geographic mobility on Canadian military families and their children’s access to special education services. The secondary objective was to gain insight into supports that helped facilitate access to services, as well as supports that participants believe would have helped facilitate access. A qualitative approach, interpretive phenomenological analysis (IPA), was employed due to of its focus on individuals’ experiences and their understandings of a particular phenomenon. IPA allowed participants to reflect on the significance of their experiences, while the researcher engaged with these reflections to make sense of the meanings associated with their experiences. Nine semi-structured interviews were conducted with civilian caregivers who have a child with special education needs. An interview guide and probes were used to elicit rich, detailed, first-person accounts of their experiences navigating new special education systems. The main themes that emerged from the participants’ combined experiences addressed the emotional components of experiencing a transition, factors that may facilitate access to special education services, and career implications associated with accessing and maintaining special education services. Findings from the study illustrate that Canadian families experience many, and often times severe, barriers to accessing special education services after a posting. Furthermore, the impacts reported throughout the study echo the existing American literature on geographic mobility and access to special education services. Building on the literature, this study also highlights the need for further research exploring factors that create unique barriers to access in a Canadian context, resulting from the current special education climate, military policies, and military family support services.

The Roles of ‘Conventional’ and Demand-Responsive Bus Services

Purpose - The roles of ‘conventional’ (fixed-route and fixed-timetable) bus services is examined and compared to demand-responsive services, taking rural areas in England as the basis for comparison. It adopts a ‘rural’ definition of settlements under a population of 10,000. Design/methodology/approach - Evidence from the National Travel Survey, technical press reports and academic work is brought together to examine the overall picture. Findings - Inter-urban services between towns can provide a cost-effective way of serving rural areas where smaller settlements are suitably located. The cost structures of both fixed-route and demand-responsive services indicate that staff time and cost associated with vehicle provision are the main elements. Demand-responsive services may enable larger areas to be covered, to meet planning objectives of ensuring a minimum of level of service, but experience often shows high unit cost and public expenditure per passenger trip. Economic evaluation indicates user benefits per passenger trip of similar magnitude to existing average public expenditure per trip on fixed-route services. Considerable scope exists for improvements to conventional services through better marketing and service reliability. Practical implications - The main issue in England is the level of funding for rural services in general, and the importance attached to serving those without access to cars in such areas. Social implications - The boundary between fixed-route and demand-responsive operation may lie at relatively low population densities. Originality/value - The chapter uses statistical data, academic research and operator experience of enhanced conventional bus services to provide a synthesis of outcomes in rural areas.

Almetrics: measuring the influence of the media on the social impact of research

Social media is changing the way we interact, present ideas and information and judge the quality of content and contributions. In recent years there have been hundreds of platforms to freely share all kinds of information and connect across networks. These new tools generate activity statistics and interactions among users such as mentions, retweets, conversations, comments on blogs or Facebook; managers references showing popularity ratings of more references shared by other researchers or repositories that generate statistics of visits or downloads of articles. This paper analyzes that have meaning and implications altmetrics, what are its advantages and critical platforms (Almetric.com, ImpactStory, Plos altmetrics, PlumX), reports progress and benefits for authors, publishers and librarians. It concluded that the value of alternative metrics as a complementary tool citation analysis is evident, although it is suggested that you should dig deeper into this issue to unravel the meaning and the potential value of these indicators to assess their potential.

Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

BACKGROUND:
Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice.
METHODS:
Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4.
DISCUSSION:
The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting.

Responsibility and Well-Being: Resource Integration Under Responsibilization in Expert Services

Responsibilization, or the shift of functions and risks from providers and producers to consumers, has become an increasingly common policy in service systems and marketplaces (e.g., financial, health, governmental). As responsibilization is often considered synonymous with consumer agency and well-being, the authors take a transformative service research perspective and draw on resource integration literature to investigate whether responsibilization is truly associated with well-being. The authors focus on expert services, for which responsibilization concerns are particularly salient, and question whether this expanding policy is in the public interest. In the process, they develop a conceptualization of resource integration under responsibilization that includes three levels of actors (consumer, provider, and service system), the identification of structural tensions to resource integration, and three categories of resource integration practices (access, appropriation, and management) necessary to negotiate responsibilization. The findings have important implications for health care providers, public and institutional policy makers, and other service systems, all of which must pay more active attention to the challenges consumers face in negotiating responsibilization and the resulting well-being outcomes.

Responsibility and Well-being: Resource Integration under Responsibilization in Expert Services

Responsibilization, or the shift in functions and risks from providers and producers to the consumer, has become an increasingly common policy in service systems and marketplaces (e.g., financial, health, governmental). Responsibilization is often presented as synonymous with consumer agency and well-being. We take a transformative service research perspective and utilize the resource integration framework to investigate whether responsibilization is truly associated with well-being. We focus on expert services, where responsibilization concerns are particularly salient, and question whether this expanding policy is in the public interest. In the process, we develop a conceptualization of resource integration under responsibilization that includes three levels of actors (consumer, provider and service system), the identification of structural tensions to resource integration and three categories of resource integration practices (access, appropriation and management) necessary to negotiate responsibilization. Our findings have important implications for health care providers, public policy makers, and other service systems, all of which must pay more active attention to the challenges consumers face in negotiating responsibilization and the resulting well-being outcomes.